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6 days ago · NETs, Toilet Paper, a rant and a little humor in Neuroendocrine Tumors (NETs)

Thank you for the link. Luckily it was laparoscopic surgery. My abdomen was so inflamed the surgery took > 1.5 hours (estimated 45-60 minutes), because surgeon had trouble getting gall bladder out. I’m grateful she stuck with it, I’d much rather deal with extra bruising and swelling than a traditional incision. I’m healing quite quickly, so I can’t complain.

Tue, Jun 30 3:00am · NETs, Toilet Paper, a rant and a little humor in Neuroendocrine Tumors (NETs)

Thank you for checking in. I’ve still been having symptoms. I’m staying open to the possibility of seeing someone at Mayo. However, add another wrench to the story. June 23 I had emergency gall bladder surgery. Im really hoping some of my symptoms were actually from my gall bladder. I’ve had constant GI distress since Friday when my system started working again, but have been assured this is normal for about a month following gall bladder removal. However, what they can’t tell me is going forward from one month, what I might expect with no gall bladder given my history. I’m scheduled for post-op surgeon visit 7/6, an MRI in July to check the common duct for blockage (an ERCP was scheduled after my surgery, but later deemed not necessary), an EDG in July to check Barrett’s Esophagus status and to see if NET has regrown in Fundus and tattoo the area for possible future surgery. I see my oncologist in early August. My body apparently likes to cause drama and stress.

Sat, Jun 20 4:07pm · EMG painful? in Neuropathy

I had an EMG a very long time ago, 15+ years ago. I don’t remember it being painful, but that may depend on the person doing the test. A first attempt at having a blood oxygen test was so painful that they never did complete the test after multiple sticks. I actually thought I was going to pass out. Had another one about 2 years ago and I barely felt it.

Mon, Mar 30 7:05pm · NETs, Toilet Paper, a rant and a little humor in Neuroendocrine Tumors (NETs)

Do you know if tele-appointments are available? It’s very unsafe for me to travel right now.

Mon, Mar 30 8:21am · NETs, Toilet Paper, a rant and a little humor in Neuroendocrine Tumors (NETs)

I have not had any of the specialized scans, only regular CTs. Insurance wouldn’t cooperate. They denied it based on the CT not showing anything. Which, is confusing to me as everything I’ve read says CT isn’t very good at showing NETs and my oncologist told me CTs have a very hard time showing inside the stomach. If it isn’t a reliable test, why use it to validate another type of test?

I live in Missouri, just outside of St Louis. My oncologist is at Siteman Cancer Center in St Louis. I ended up at MD Anderson for my sarcoma, after I contacted a doctor there to ask him a question after my cancer had recurred and was deemed inoperable, incurable and radiation failed to slow progression. The amazing doc invited me to be seen at MD Anderson and got me a quick appointment. My local sarcoma oncologist and my MDA sarcoma oncologist worked together, but my chemo treatments were done locally. When the NET was diagnosed, I immediately reached out to both sarcoma oncologists, who hooked me up with my local NET oncologist at Siteman, and the GI oncology department at MDA, where I only met with an oncology-surgeon.

I have wondered about possibly seeking a third opinion. With 2 oncologists telling me there isn’t anything they can do for me until the NET grows back, I feel a bit in the dark. I asked if I should be seeing an endocrinologist or any other doc with all of my most recent diagnosis, and although I was highly encouraged to seek additional oncology opinions, I was told there was no need for me to see another specialist other than the gastroenterologist. I was given all the other diagnosis but I really have no info on what they mean other than I need the B12 injections.

To complicate matters further, a month after my NET diagnosis, my wonderful PCP, took a medical hiatus with a plan to switch to a new medical group, so I lost him as a resource as well, but planned to follow him to his new practice. Then, his plans fell through and he ended up moving to the other side of the state and opening a practice in his hometown. My new PCP hasn’t been much help as far as info either, just giving me a couple NET sites to refer to, both of which I had already found. She offered me nothing on the other diagnosis. I’m not sure if I’m going to stay with her, but I’ve only seen her once and I’m not ready to move on just yet.

I’ll keep in mind the possibility of another opinion at Mayo. However, with this virus issue, I’m terrified of stepping foot in a hospital and getting exposed. The outcome would not be good, due to my other health issues. At that point, the NET wouldn’t matter either, I guess.

Are there treatment options available that I’m not being offered? I think part of the problem is the lack of info on my NET tumor. The gastroenterologist that found the NET, is with a small hospital, close to my home and is in a different medical group than my Siteman. (I have switched to one that is the same network as Siteman) The only tissue my oncologist has had to work with is the slides that were already stained by the original pathologist. My oncologist really wants (needs?) more info regarding my tumor, but has no way to access it until the tumor re-grows and he can get tissue samples. The initial pathology suggested that my NET was type 3. However, my local oncologist, pathologists at Siteman and MDA, and the surgeon at MDA all feel it is actually type 1. Given the lack of specimens at this point in time, I’m not sure if any other oncologist could offer me other options.
It’s all so complicated and confusing.

Sun, Mar 29 3:47am · NETs, Toilet Paper, a rant and a little humor in Neuroendocrine Tumors (NETs)

I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance in College, and survived recurrent Neuro-fibrobSarcoma in my brachial plexus, which was diagnosed in 2005, even though I was diagnosed terminal in 2006. I was released by my local oncologist 8/2018. I still see my MD Anderson team, every 2 years. I just feel like a hypochondriac when I bring a health issue up. Probably partially due to 5 years of being told my pain was all in my head, prior to the sarcoma being found.

My PCP was treating me with iron infusions and concerned about my severe anemia for several years. Fall of 2018, lower right abdominal pain sent me for CT (clear) and then to Gastroenterologist. He did colonoscopy (normal), I did confide my GI issues. 4 months later, out of the blue I get a call from him. He wants to do an EDG, looking cause of the anemia. A polyp was found in the Fundus. Biopsy revealed the NET in the polyp, with no clear margins, 4/2019. The next 4 months were insane. 3 more EDGs, in an attempt to tattoo the NET area on the stomach. They were not able to ID the location, although the last one, 7/2019, did find pre-cancerous cells. Through all this testing, I’ve been diagnosed with Pernicious Anemia, chronic gastric inflammation, chronic gastritis, gastric autoimmune disorder, Barrett’s Esophagus. I experience flushing, always experience it with any bit of physical activity. My last oncology appointment at Siteman Cancer Center, St Louis, was 2/2020. I’m in a wait and see mode. My next EDG is supposed to be 7/2020, unless it gets cancelled as an “elective procedure“. After the polyp removal last April, my GI issues did lessen. However, they’ve been coming back lately. It’s been a gradual increase. My Chromogranin and Gastrin levels were quite elevated again, at my February appointment, although still lower than they were one year ago. I’m assuming the increase in symptoms means the tumor is back, which is what docs have been waiting for. They were talking of removing part of the stomach, definitely doing genetic testing on it. I had contacted my oncologist in March, following a particularly bad symptom week. He asked me to keep an eye on it, as it could be a virus. Then, COVID19 hit. I haven’t followed back up with my oncologist. I’m scared to step foot in a hospital. My sarcoma surgery (lack of reconstruction), 32 radiation treatments, 13 months of chemo, have left me a respiratory mess. I’m on oxygen and get bronchitis/pneumonia extremely easily, and have dual -chronic pleural effusions. I had a Balloon Sinu-plasti 8/2019, which has cut down my sinus infections, which always turn into bronchitis. I’m thinking I’ll just hang in here until the July EDG. The severe diarrhea is pretty sporadic right now, so I’m hoping a few more months won’t matter much. If it gets really bad, I’ll contact my doc. I know my lungs can’t handle COVID19. My right lung only has 10% functioning and for some unknown reason, the left isn’t able to compensate.

I had 85 gene genetic testing completed. No mutations and no variants were found. The genetic counselor was astonished. The only treatments I’m receiving for my new diagnosis are: B12 injections, Ranitidine, probiotics, iron supplements. I sometimes take Imodium but I try not to. I don’t drink alcohol, but have not found any dietary link to my GI symptoms.

I honestly feel pretty clueless about my situation. I’ve learned some from this forum and from online info. A LOT has changed in oncology since my prior treatment. While my sarcoma type and location were extremely rare, I guess my NET and having it in the stomach are even more rare. Lucky me. There just isn’t much info available. My oncologist at Siteman is experienced with NET, and works closely with MD Anderson. I was seen by a GI surgeon at MD Anderson 7/2019, after referral by my Sarcoma Oncologist at MDA. All the MDA GI surgeon said was, “not a candidate for surgery right now since tumor isn’t present”. I did not see a GI or NET oncologist at MDA.

So, here I sit, waiting for NET to grow back, and praying that I can avoid the Corona virus.